Lilly Mae's Appeal

Hi all thanks for taking the time out to read these blogs, I havn't been able to update it much lately due to lillys health and mammoth appointments, so i thought id just give you a quick update Lilly is just getting over a bad cold which i was convinced was as usual going to settle on her chest and make her iller but fingers crossed she is getting over it, she is still not sleeping more than a few hours a night so were very tired!! weve an appointment with bluebell wood childrens hospice next week to see if they can offer us any respite so we can sleep, im hoping they can! although i feel a little bit of a failure for needing their help but carrying out all her physio, therapy and appointments after no sleep is no fun at all!

Were still waiting for appointments to see the cardiologist and the immunologist so we've no new answers there about her health, we see the respiritory doctor next week so we will see if he agree's with lillys other doctor about her needing a sat monitor at home and possibly oxygen for when her breathing is bad.

One thing i am looking forward to and not looking forward to is she is getting splints for her legs, now i don't want her to have splints but one thing i have neber being able to do is buy lilly pretty, girly shoes as she has always had to have to huge special boots to help her walk, the doctors are hoping the splints will do the same job so hopefully they will work and she can finally have a real pair of shoes, i will be soo emotional on that day as its upset me for years not being able to buy my daughter nice shoes! the only drawback is she has to have plaster casts put on her legs on monday to give a good cast of her legs for the splints so that will be fun!! NOT!!

We also have an appointment with her eye doctor for the dreaded results of the cortical visual imparement test and also for another eye test, so wetre praying for no more deteriation in her vision.

Also one good thing is Lilly starts hydratherapy sessions next week so that should help her muscles!

Till next time guys take care and THANKYOU for all your continued support and for all the recent donations! and remember if you know of anyone who may be able to help us with a donation of raffle prizes for the 'stars in our eyes' evening that would be fantastic thankyou xx